Individuals with an incurable condition marked by decline and intolerable suffering and where death is reasonably foreseeable, as with dementia, now have access to medical assistance in dying (MAID). Family caregivers ofpersons living with dementia support MAID but the reasons for this support are poorly understood. This study aims to examine the extent to which such support might be related to burden and unmet caregiving needs, along withconcerns about entry into long-term care.

We want to understand why persons living with dementia request MAID from the perspective of their family caregivers and if concerns about the nature and quality of long-term care play a role in this decision. The study also examines whether concerns about burden of care and unmet caregiving needs shape family caregivers’attitudes towards MAID and if there are changes in the way long-term care is delivered that might alter such attitudes.

The methodology of constructivist grounded theory will be used for this study. This approach employs theoretical sampling where the researcher gathers data and conduct analysis in parallel throughout the project. With assistance from The Alzheimer Society of BC, 25 family caregivers from the Victoria and Vancouver areas and from other communities in BC will be recruited to do in-depth interviews Caregivers will have the option of involving their spouse/parent living with dementia in the interview.

This study will bring an understanding of the reasons for motivating persons living with dementia to request MAID from the perspective of family caregivers. We expect the findings to confirm that concerns about burden and the adequacy of long-term care play a role in this decision. This finding will underline the need to improve long-term care and to support family caregivers and persons living with dementia in the complex decision to transition to long-term care.

The results of this study will highlight the complex and difficult nature of contemplating entering long-term care inthe context of the recent availability of MAID. The worry is that MAID might be perceived as an option to avoid thewell-publicized issues associated with long-term care, thus further pointing to the importance of addressing qualityof care from a person-centred perspective to ensure the dignity and comfort of persons living with dementia.